The hearing, scheduled all day on June 29th, will showcase 7 innovative, existing privacy-enhancing Health IT products and systems, and future technologies. The technologies will be discussed by 4 experts and the Privacy and Security Tiger Team.

Early this year, Dr. Blumenthal met with the bipartisan Coalition for Patient Privacy. He told us our idea for this conference struck him as “very intriguing. Two principles should animate our policy development. Patients/consumers come first, and the process should be fair and open.” So he agreed to hold a hearing.

This is the first hearing ONC has ever held that is focused solely on privacy rights and patients’ expectations to control sensitive health records, from prescriptions to DNA. It is VERY timely because billions in stimulus dollars are about to flow.

What kinds of systems do you want to get the stimulus billions??? Current HIT systems that facilitate the data mining, theft, and sale of personal health information or systems that put YOU in control of YOUR information?

Inside-the-beltway domination of policy and standards by major legacy health IT vendors, many major hospitals, the health data mining industries, and physicians’ organizations has made it very hard for consumer and privacy advocates to be heard, even though we represent the majority of the American public. The fear is if they have to ask first to see or use our health information, we might refuse. And we might. But it’s our right to do so.

Today’s HIT systems put our jobs and our kids’ futures at risk by exposing everything from our prescription records to our DNA to sale and theft. Once our health data is exposed, like Paris Hilton’s sex video, we can never make it private again.

Showcasing technology that empowers patients to actively share data for treatment, personal benefit, and for research, while empowering patients to protect personal information to prevent harms is critical—especially now as HHS prepares to spend billions on EHRs and models for data exchange that do not require meaningful and comprehensive privacy controls.

The video of the hearing will be a critical online resource for the public, the media, states, and the world. There is no other way to learn about robust privacy-enhancing technologies that meet patients’ expectations and rights to control use of PHI while enabling compliance with strong state and federal laws, medical ethics, and our Constitutional rights to privacy.

If you cannot attend in person, PLEASE listen in and comment at the end during the comment period or submit comments online. The video link of the hearing will be posted the following day.

TAKE PART: Tell ONC to build privacy-enhancing health IT systems you can trust. Tell ONC to build privacy-enhancing EHRs and systems for data exchange, don’t blow the stimulus billions on systems that will never be trusted.

If we don’t fight for our rights to control sensitive personal health information, we will never GAIN the right to control the rest of our personal information online and in the Digital World.

Thanks for helping to save privacy!

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More and more genuine consumer pro-privacy groups —as opposed to privacy-lite, industry-supported, faux consumer organizations—are speaking out to restore privacy in electronic health systems. Support for privacy rights will build and build. There may be set-backs, but we cannot be stopped. See this recent article on Consumer Watchdog supporting patient privacy.

The real reason privacy will win is simple and practical: electronic systems will never be trusted or work unless consumers control personal health information.

In the words of Justice Brandeis: “The right to be let alone is the most comprehensive of rights and the right most valued by civilized men. To protect that right, every unjustifiable intrusion by the government upon the privacy of the individual, whatever the means employed, must be deemed a violation of the [Constitution].” Justice Brandeis 1928.
Olmstead v. United States, 277 U.S. 438, 478, 48 S.Ct. 564, 572 (1928) (Brandeis J., dissenting).

Brandeis dissented from the conventional wisdom of his time. Today we are the dissenters from the CW of our time, but like Brandeis’ dissent, ours will prevail.

In 1999, the California HealthCare Foundation (CHCF) released a groundbreaking study of Americans’ attitudes and behaviors concerning health privacy. The study found that nearly three out of four Americans had significant concerns about the privacy and confidentiality of their medical records. Now six years later, following implementation of national privacy protections under the Health Insurance Portability and Accountability Act (HIPAA), and the President’s push to adopt electronic medical records, a new CHCF survey plumbs consumers’ attitudes about the privacy of their health information.

Conducted by Forrester Research, the survey reveals that—despite federal protections under HIPAA—two in three Americans are concerned about the confidentiality of their personal health information and are largely unaware of their privacy rights.

In addition, one in eight patients reportedly engages in behavior to protect personal privacy, presenting a potential risk to their health. More than half (52 percent) of respondents are concerned that employers may use health information to limit job opportunities, highlighting the implications of the privacy issue.

Yet despite these concerns, consumers report a favorable view of new health technology, with a majority (59 percent) willing to share personal health information when it could result in better medical treatment.

As efforts to develop a nationwide health information network proceed, unaddressed concerns about personal privacy could have major implications.

The complete survey findings and an executive summary are available under Document Downloads below.